Autism parenting

I’m adding this addendum to my last post because this happened, and then this excellent, perfectly stated response happened. And I realized that in my last post when I said if your child doesn’t like going somewhere don’t go, it may have sounded like I was suggesting “just be house-bound” or “don’t try outings that may be difficult.” It may have come off as cavalier and that was not my intention.

My intention was to say: (1) go places your child likes, as opposed to places you think he/she should like, and (2) if its a place you think they would enjoy if only it could be accessible for them, work on making it accessible rather than forcing them into it in spite of it being set up in an inaccessible way for your particular child (eg sensory overload). And finally, remember, as Tonia points out, sometimes you have to be patient and wait until your child is ready to enjoy certain outings/activities, because our kids have their own timeline, and it diverges from the neurotypical timeline for a lot of things. And that’s okay.

Let me give some examples from my own experience.

Driving for a day trip to NYC this last Saturday. For the last few years we wouldn’t have been able to do this. In the picture R. is smiling so hard because sister’s feet are in his lap.

Up until a few weeks ago, we had not gone out to eat as a family in about four years. R. simply could not tolerate that environment, and the few times we tried it involved one parent going outside with him while the other ate with my older two kids, then a switch so parent #2 could eat while #1 went outside with R. We found this arrangement rushed and unenjoyable, so we stopped trying to do it. This was not an autism tragedy. We simply adapted. We enjoyed plenty of take-out instead, and from time to time my husband or I would take the older kids out to eat while the other parent stayed home with R. This gave us a chance to have one-on-one (or one-on-two) time with them. My husband and I would also occasionally go out for lunch just the two of us while the kids were all at school. It worked, and it was no big deal. But a few weeks ago, at age 5, we were able to go out to eat, all of us together as a family, for the first time in years. It was exciting and we had fun. And yes, it only worked because we set up strategic accommodations for R, and because we were patient enough to wait until he was ready and able to handle it. In terms of accommodations, we went during non-peak hours because R cannot tolerate large groups of people. We grabbed a large L-shaped booth in the back where we stationed ourselves on either end of the L-shape so that R could not bolt away, but had plenty of room to pace and jump back and forth along the L-shape. We chose a restaurant with very loud music so that R could vocally stim loudly without disturbing others. We brought his iPad so he could watch his videos, and we brought his own food (the restaurant was gracious enough to allow it) because his diet is very limited and we knew he would not eat anything we ordered. I also want to reiterate that even with all these strategies in place, for the last few years it still wouldn’t have worked because he wasn’t ready yet. And I think I should point out that R is hyposensitive to most sensory input, which is why this worked for us. A child who is hypersensitive would need a quieter restaurant, and perhaps headphones to cancel out the background noise.

R. with his uncle. This is the first time in several years that we could take R. to my parents’ for Christmas. He was ready, and he did great.

In the beginning of this post I linked the Washington Post article about a mom who traumatically forced her five-year-old Autistic child into indoor spaces that caused panic attacks for him in an effort to make him overcome his anxiety. Anyone who has followed my blog knows that for a very long time R had that same anxiety and panic in unfamiliar indoor spaces. I have written about it in several posts like this one and this one. Our approach for places he *had* to go to (not like Ellenby, who forced her son into a Sesame Street concert) was to work on it for months in the tiniest possible increments. And when it came to non-essential places, like recreational spaces, we waited, and in the meantime, spent lots of time outdoors since he was fine in outdoor spaces. This was limiting at times. We could not visit family, they had to visit us. If we wanted to take our older two somewhere, one parent (usually me) had to stay back with R. But it wasn’t the end of the world and it wasn’t all about our sacrifices as parents. We tended to think of it terms of poor R, who had to struggle with this huge anxiety despite being such a tiny little boy. I have anxiety myself and have experienced panic attacks. They are so terrifying. And knowing that my toddler was having panic attacks broke my heart into a million pieces. So no, staying away from places that caused a panic attack was not some huge sacrifice for us, it was really the least we could fucking do for our sweet little boy. So we waited, and as he grew and acclimated to more indoor spaces (school, doctor’s office, etc) we slowly introduced new spaces with careful accommodations in place. For example the Boston Children’s Museum does accessible mornings and evenings where they will open the museum during off-hours. It is open only to children with disabilities and their families, they limit it to a small count of people (R cannot handle crowds so this is crucial for him), and they make sensory accommodations like low lighting and sound. The first time we tried it he could only handle it for about 15 minutes, then he needed to leave so we left. The next time he was able to stay for a whole hour. We followed his lead and took it slow. Now, at 5, he is in a place where he can go most places as long as it is not crowded and for discrete amounts of time (he makes it very clear when he is done and needs to go). He also generally needs to be able to stim freely to help himself cope, so that also factors in when we choose where we are going.

The bottom line is be flexible and be patient. And if, as time goes by, you see that the severe anxiety is not abating despite all efforts and despite the child’s growth and development, eventually the option of medication should be considered. I know several parents of Autistic children for whom pharmacological treatment of severe anxiety was life-changing. I’m sure you can imagine what it’s like to finally see your happy, smiling child again. We need to end the stigma surrounding medications for mental health. It shouldn’t be the very first thing we jump to, but when other approaches fail, an individual should not be left suffering when there are pharmacological options that could greatly improve their quality of life.

Alrighty, I’m off my soap box. Thanks for listening. 🙂

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Okay. I’m going to vent here a little. And I’m sorry/not sorry if I am, in this post, seated on my proverbial high horse. A Facebook discussion really got this topic back on my mind. It drives me nuts when people share videos/blogs about how hard it is to be the parent of an Autistic child.

So much ‘autism parent grief’ is preventable if said parents could just let go of what they thought parenting would be like, and create something new that fits their child and their family. This phenomenon is not restricted to parents of Autistic kids. I’m sure every parent recalls those moments with their NT child where they envisioned this wonderful parent-child experience, but instead the child hated it and it was a disaster. I think the meme below, created by and for parents of NTs, illustrates it beautifully.

The difference is, it happens a lot more often and more dramatically to parents of Autistic kids. And while I understand parents’ disappointment of lost expectations, there is a point at which you’ve gotta put on your big girl panties, accept your child, and stop setting yourself up for more disappointment. …and setting your child up for more misery (!!!).

I can’t count how many times I’ve read an autism parent blog lamenting the tragedy of another birthday during which their child covered his/her ears and screamed at the Happy Birthday song, then proceeded to have a meltdown at the sensory overload and social overwhelm of the whole event. In these parents’ narrative it is not the child who is the victim of the story, it’s mom and dad. Poor mom and dad, who can’t even experience a proper birthday with their child. These parents will go on to repeat the whole fiasco next year. And they will grieve it. Again. And their child will suffer. Again. Folks, this is completely preventable. It’s not your day, it’s your child’s day! Stop singing Happy Birthday if your child hates it. Stop inviting all these people over. Figure out what works for your child to make it a special day and do that.

My son does not recognize gifts. But he LOVES Target, so for one of his birthdays, we pasted Target logos all over his gifts to make them attractive to him. This is one tiny way we were able to adjust to make his day special.

I see it with other stuff too. Trips to places the child is “supposed to” enjoy but doesn’t. Child doesn’t want to sit on Santa’s lap. He or she is screaming, self-injuring, melting down. Mom is moaning to the internet about how hard it is, how terribly sad, how all the nice little neurotypicals waited happily in line, smiled big for Santa. But your child didn’t. Guess what mom? Stop taking your child places he/she cannot tolerate and this won’t happen. It’s that simple. There was a family in an autism documentary I watched where the little boy’s favorite thing was to ride the city buses. Every day after work his Dad took him to ride his favorite bus lines for a few hours. That is what he loved, and so that is what they did together to connect and bond. In the end, shouldn’t it be about our kids? Stop making it all about you. Yes, it’s hard sometimes. You know what, parenting is hard. Take care of yourself, seek out supports, but when it’s you and your child, structure your family in a way that accounts for your child’s individual needs, challenges, interests, and joys.

When I talk to parents of a newly diagnosed child, one of the first things I always try to impress upon them is this: adjust your expectations. When you do, it has the power to change your entire outlook from a grief-centered perspective to a contented “this is our awesome family” perspective. I suppose that is the basic message of the famous “Welcome to Holland” poem which is oft shared with parents of newly diagnosed kiddos. And it really makes all the difference. Don’t set yourself up for more grief, more disappointment. Don’t make your child suffer for your own rigidity (hah- do you see the irony?). Find a way to be flexible, to grow your parenting into something that fits with your kiddo. Welcome to Holland. It’s not Italy, but it can absolutely be great, if you would only give it a chance.

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My boy exists at once in overlapping realms. He is here, but also in another place, a place where I cannot follow. His realm is a realm of music. As it overlays my own, I can sometimes glimpse its edges, sometimes make out a silhouette. I catch something in the corner of my eye; I reach out and feel it like a mist against my hand before it slips away.

This is not about hearing and listening, this is not about sound or song. This musical realm is so much greater than that. It is, at its core, a place of vibration. The vibrations are a music that my boy can feel, taste, touch, hear, and see. It is a multisensory language in which he is perfectly fluent. He can create it with his hands, his mouth, his feet. He can chew it; he can pound it into vibrant existence; he can shout it, howl it, screech it; he can blow it, click it, whisper it. He can measure it, map it, and sometimes he can use these calculations to approximate the verbal speech of my world. Sometimes. When the music moves him to do so. Sometimes.

You hear him making strange and senseless noises, but I know different. I hear him singing joyously the song of the microwave’s hum, of the vacuum’s roar, of the truck’s engine, of the chirp of someone’s cellphone, the shriek of the kitchen timer.

I see him chewing gravel and feeling, listening to the crackle and grind in his inner ear. I see him dumping coffee beans on the floor to orchestrate a wildly raucous staccato, like heavy rain on a tin roof. I see him slapping tiles and bricks and walls and windows, licking them too, in a symphony of feeling, hearing, tasting, seeing.

My boy is master of his realm. He is its conductor, its composer, its musician, and often, its instrument. He firmly rejects what does not belong in his song. “Come sit,” we say, but his song is a song of movement. “Eat this,” we say, but it doesn’t taste of his song, it does not crunch in his mouth like the percussion of his orchestra. “Do this,” we say, but it is often irrelevant to his music at best, a painfully discordant note at worst.

Sometimes our world combines magically with his, playing a delightful harmony to his melody. He joins joyously, laughingly, exuberantly with us. He learns what we offer him, and uses it in his song. His song grows with him and he is growing, growing. He is blossoming. We see him and he is rhapsodic, glorious, ebullient.

Never change, I think, never change, I pray. You are perfect. You are indomitable. You are my own sweet swan song.

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Sometimes I try to look inward and analyze my feelings for R. My love for him is so intense it is almost painful at times- the kind of pain that is an echo of the fear of losing him, knowing it would rend me completely. This intensity of feeling is ever present when I think about R, but it’s not that way when I think of my other two children. This has bothered me every time I get to that point in the inward analysis. I try to dissect it, to understand it. I think about my feelings for each of my children very carefully, and, I hope, objectively. I always come to the conclusion that I love them each the same amount, I just love them each differently. but never less. So why the difference in that sense of intensity when I think of R compared to my other two children?

When I sit down and really think of that overwhelming, intense feeling my love has for R, I realize I have felt it about my other children, during discrete periods of high stress when they were in some type of danger or distress. I felt it for weeks when Mohammad was a newborn. He had pyloric stenosis and was so sick, literally starving and shrinking before my eyes for his first weeks of life. He was initially misdiagnosed and by the time they finally hospitalized him and figured out what was wrong he was so sick and dehydrated that they delayed surgery for 3 days to stabilize him because he wouldn’t have survived the stress of surgery otherwise.

For those tumultuous first two months of my older son’s life, my feelings of love had that same painful, overwhelming intensity that I associate with R. In fact, when my second child, my daughter, was born 18 months after her older brother, I had a hard time bonding with her. When I got pregnant with R a few years later I opened up to my midwife about the trouble I had bonding with my daughter when she was first born. I remember telling her that I didn’t understand it- everything was so easy with my daughter compared to what happened with her older brother. She was perfectly healthy, never even lost an ounce of her birth weight. Everything went perfectly. So why had it taken 6 weeks for me to bond with her? Why had I felt so confused and apathetic? My midwife suggested that that was just it. My only association with a new baby was one of extremely high stress and intense emotion. My normal meter for what it was like to have a newborn was very off, and it probably impacted me when I had my daughter.

I think the midwife was right. And while it took a few weeks, one day, just overnight, something clicked and that solid mama bond formed with my daughter.

I’ve had those intense love feelings with my daughter too- times when she was in the ER after a bad fall or after having been very sick with one thing or another. The same goes for my oldest son over the years. But that intense-emotion thing is not my day-to-day feeling for them. But it is for me with R. And I am realizing that for years we’ve existed in that high-stakes, high stress, intense, overwhelming please-don’t let-him-be-hurt-please-don’t-take-him-from-us place with R. He is vulnerable in so many ways that my other children aren’t. I am constantly, yet often subconsciously, on alert for him. He’s four and a half and I still wake in the middle of the night in that irrational half-asleep panic where I have to check his breathing to make sure he didn’t somehow stop breathing in his sleep. This is something I did with all my kids when they were newborn babies. One of those weird irrational new mom panic things. But with R it never went away. And it still hasn’t.

And I think it all just reflects where we are at with R. That primal “mama bear” protective emotion is always going full throttle. My feelings are so intense for him, so much I’m bursting at times and it hurts. But I don’t love him more than my other children. It’s just that place, that parent “mode” we go to to protect our young when we feel that they are threatened. Only with most kids that mode is temporary, like using the 4 wheel drive to get out of the mud or drive through snow. It’s not a mode you use all the time for most parents or with most kids. But with R we are always there.

That’s how I see it anyway. I wonder if it will lessen as he gets older and I don’t know. I do know that I don’t see it as a bad thing. It’s intense, but it also makes the good moments of each day (of which there are many!) shine so much brighter. I hope as my other children grow up they see it for what it is and know without doubts that we love them just as much as their brother. I think they do understand it right now, and I often see the same fierce, protective love in their own interactions with their brother. Isn’t it funny how small children can understand effortlessly things that become a lot harder to understand when you’re older? I hope this is an understanding they are able to hold on to. I love them so much. I am so proud of them. Every single day. Even when I’m grumpy and snappy. Maybe especially then. I don’t know if I would have been as gracious and sweet and thoughtful if I were in their shoes. They amaze me, and maybe one day they will read this, in fact I hope they do. I love you guys!

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R throws his head back miserably and half-shouts, half-cries “Eeeeeeee!” He throws his whole body backwards, landing hard, kicks his legs violently, angry-cries “eeeeeee,” “mmmmm”. He flails his body over and over. I try to hold him and he desperately presses his chin into my shoulder as hard as he can, jaw clenched, while he fusses miserably. After a moment he kicks and screams and flails until I have to set him down again. This goes on for nearly two hours, then off and on the rest of the day, interspersed with periods of crying. Lately, about half of the days each week are bad days like this.

I don’t know what’s wrong. I don’t know if his pain is physical or mental. I don’t know if this will be temporary or indefinite. I don’t know if tomorrow will be better. I don’t know if I should bring him to more doctors to get more opinions. I don’t know if I should give him space or try to hold him despite his protestations. I don’t know I don’t know I don’t know.

It has been about 2 months that R has been having these episodes. At first we attributed it to an ear infection, but when that was treated the bad days continued. Then we thought it was due to constipation. But we addressed that and still the meltdowns and bad days continue. We have analyzed his sleep, his medications, his diet, his stools, checked his ears and throat countless times. He has dental work coming up. Maybe it’s dental pain. Maybe he will feel better after. But maybe not. I don’t know.

I don’t know and I hate it.

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This morning my 6 year old daughter had her winter holiday concert at school. My daughter, A, attends the same lower elementary school that R goes to. The school goes from preschool through first grade, and A is in first grade, while R is a preschooler. As I watched my daughter sing along with all the first graders before the rows of proud parents, a wave of sadness swept over me. I don’t often feel sad about R. But sometimes a sadness hits me, taking me unprepared, like this time. The mother beside me had brought her toddler, perhaps 18 months old. He was dancing to the music, pointing at the children, and trying to sing along. It was unexpectedly painful seeing the one year old like that, doing things R can’t yet do, seeing my daughter having fun on stage and wondering if R will be able to do that in two years, when he’s her age. I don’t normally allow myself to get caught up in the comparison trap. In the beginning it hurt all the time seeing other children R’s age or younger doing so many things that were worlds away for him. But over time I learned to focus on R exactly where he’s at, versus where other children are at, and to anchor myself in the present. Yet sometimes it sneaks up on me. Rationally I don’t think I need to be sad. R is generally a very happy little boy. If he doesn’t feel he’s missing out on things why should I? But there is something inside that is sometimes quietly sad, just for a moment. Always though, the sheer joy of R pulls me free of that sadness in a mighty, inescapable way. This time was no different. Just as that sadness had settled over me uninvited, as I felt the hot pressure of unwelcome tears held back, I heard his little voice. In a crowded auditorium with over a hundred singing first graders and accompanying music on the loudspeaker I heard R’s voice raised in joyful stimmy chants. A voice I would recognize anywhere. At first I thought I must have imagined it, but then it came again and I turned my head to the sound, scanning rapidly for him. I spotted him then, at the railing on the ledge overlooking the auditorium, held snugly in the arms of his morning aide. His aide caught my eye and smiled and made her way with R closer to me. I went to stand with them, said hello to R and gave him a kiss. He was grinning and happily making his sweet noises. His aide told me she wanted to show him his sister singing at the concert. They stayed a few minutes, then, as R was growing restless, she took him back to his classroom. Seeing that bright, happy little face, hearing R’s voice, it made my day and vanished the sadness utterly.I found myself suddenly profoundly grateful. R’s school feels like a family. The fact that his aide thought to take him to watch his sister sing for a few minutes speaks to that. They also take R on little trips to the main office and the nurse’s office just to visit with the staff there. Another time they pulled A out of class to come outside and push R on the swing for a few minutes. It’s so many little things, but what it adds up to is feeling like family. And today that family gave me the reminder I needed. There is nothing sad about today. Today is a good day.

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R’s therapist, helping out on a trip to the zoo. Only her arms shown here, to protect her privacy.

Stage One: She’s CoolYou’ve stopped cleaning before she comes.You no longer feel compelled to prove how involved you are, and take the much needed period of respite while she’s there to do dishes, fold some laundry, or take a shower.She doesn’t have to ask you where anything is or if it’s okay for her to do XYZ. Your husband has learned her name and recognizes her on sight. This may seem like an odd one, but when you have a revolving door of therapists, many of whom will leave after just weeks or months to pursue other career goals, it happens. Stage Two: The HoneymoonYou can handle her coming over when your house is an epic disaster that you wouldn’t even let your other mom friends see, though you still apologize for the mess. You are fine with her seeing you in your grungy sweats and that comfy tee with the stains on it (no bra) while your hair is greasy because you haven’t showered in 3 days.You can yell at your kids in front of her without feeling like a bad mom. Most of your neighbors know her by name.You don’t mind it when she gives you unsolicited suggestions/parenting advice, even when you don’t agree. Stage Three: She’s Family.She has seen you in just a towel. (There is a reasonable explanation story for this). Your kids include her in the picture when making drawings of the family. She has met more of your neighbors than you have.You let yourself have occasional mommy tantrums in front of her.You sometimes feel annoyed by her in the same way your husband or kids sometimes annoy you.